Friday August 4th.

 

Well, the well forecasted storm has hit.  Kristina is hoping to avoid the worst of it, she’s been there before.

She slept in a little and felt a bit spacy, then waited as various body parts checked in, most were moving and confirmed they were still in reasonably good working order.

Today at noon she started her last round of Chemo – Cytarabin, which in the past has given her a rash on her lower extremities.  There was a bit of nausea this morning and as a write (11:45am) the dry heaves have begun. 

While there was a momentary crack in the veneer yesterday (oh this is really happening) the cancer, chemo and other stuff haven’t disabled the sense of humor.  It remains strong. 

So today will likely be a bit rough but she’s still hopefull she can avoid the more severe side effects of the chemo.  Time will tell, let’s all send her positive energy.

CHEMO -- a brief history and what's about to happen

 

This is going to be greatly simplified, but Kristina reviewed and said ‘post it’. 

We all know that Chemo has massive side effects, but the question that popped into my head was ‘why’.  What was the history of Chemotherapy, how does it work, and why are the side effects so miserable?

Surprisingly (to me at least) the roots of ‘Chemo’ date back to and begin with Germany’s use of mustard gas in world war I.  After the war two pharmacologists from the Yale School of Medicine were tasked by the defense department to see if there were any beneficial uses of these chemical agents and they made the link between derivatives of this terrible battlefield weapon and their ability to kill cancer cells.

The specific cocktails involved in Chemo have evolved quite a bit and are varied in their approach, but they work by killing fast dividing cells.  Most cells our bodies don’t divide particularly fast or regularly.  Cancer cells divide quite rapidly, so if you send in an agent that seeks out and kills fast dividing cells, it’ll attack the cancer cells and most of our healthy cells that don’t quickly replicate are left unharmed.

But there are a few categories of healthy cells that do replicate quickly and those are the ones that become collateral damage with Chemo’s onslaught.

The key cells that divide quickly are found in your mouth, blood, digestive system and hair follicles.  So hair loss, mouth sores, and all sorts of digestive tract distress are the side effects.  The blood levels plummet and there goes the immune system.  Infection risk is high.

So after chemo your digestive tract goes to hell, nausea threatens expel food one way and the other end, and the plumbing that lead to it, doesn’t work well either.  Nothing tastes good, your mouth feels rotten and any germ that feels like it can attack you without risk.

Chemo also creates a fog in the brain.  “Chemo Brain” becomes a phrase that’s well known to those that have undergone treatment.  Add to that the side effects of the drugs that are controlling nausea and other meds and, well, it’s not a walk in the park by any stretch.

So while some of us are looking forward to SeaFair and the air show over Lake Washington, Kristina, having gone through this before, is awaiting these side effects to fully manifest themselves. 

Using  sailing as a metaphor, picture yourself on the ocean without any port to run to.  A well forecasted storm is headed your way and you can’t outrun it.  You are going to have to shorten sail, make sure everything is securely stowed and dog the hatches tightly shut and simply take it, hoping that all your preparation will keep you safe.  Miserably uncomfortable, but safe.

This morning I asked Kristina how she felt on a scale of 1 to 10, where 1 is lousy and 10 was pretty good all things considering.  She said 7 or 8.  On the plus side no stuttering or shakes so far this morning.  But her appetite is gone and while she can’t quite put her finger on it, she says ‘something is brewing’.  She doesn’t feel completely ‘right’.  Storm clouds are gathering.  Yesterday she mused that Saturday would be the day she’d start to feel much worse, perhaps it’s starting a day or two earlier.

Take a moment and let’s hope our collective positive energy flows her way.

DIP and the rocky journey

 

Ok, it's a bit juvenile, but the graphic above captures the curvy and erratic journey of a transplant patient.  There are little and big things lurking along the way that vary from irritating to annoying to frightening.

Sometimes it helps when things are explained.   It may not make the symptom go away but at least an explanation can take away the worry that accompanies a symptom.  

Take her stuttering speech, the inability to walk well and her shakiness and tremors.  Annoying and frustrating.   But explainable as her doctor did a couple of hours ago.

It's related to the nausea meds.  The Dr explained there's a tie between those meds and cognition.  It's a thing.  

While the Dr didn't use this exact term, there's a condition called DIP.  Drug Induced Parkinsons.  No, she doesn't have Parkinsons.  But the symptoms are not unlike Parkinsons and should subside with the cessation of the meds.

Kristina was really feeling those effects today but the doctors explanation eased at least that worry.

AUGUST 2nd. That shaky feeling the day after

 

Well yesterday got away from Kristina.  Like platelet transfusions there’s a sedative involved, but more this time.  There’s a preservative in the stem cell stew and they sedate you in case there are any reactions – so just as the transplant started, the sedatives took effect and, well, the rest of the day was pretty much lost in the fog.  She woke up and thought that it was 2:30 in the afternoon but the clock said 7:45pm.  The clock was right.  An odd, weird day.   But a good one with the long awaited transplant done.

This morning she reports that she’s feeling pretty good, but a bit shaky – stuttering and stumbling over words, not walking right, etc.  Largely it’s a repeat of her earlier 2 transplants.  She thinks that sensation is due to the antiemetics she’s taking – the drugs to combat nausea.  She’s frustrated by it, but she knows what’s coming – the delayed impact of the chemo. 

She’s expecting that by Saturday she’ll be laid pretty low by the after effects of chemo.

Today’s news:  Her Liver Enzymes shot up.  Way up.  They’ve shot up before, but not to this degree.  There may be some med related impacts.  Her doctor said it was like she went on a huge drinking binge last night.  Which she didn’t.  Or at least doesn’t recall (maybe yesterday’s singing nurses returned for a party?  Probably not).  A short term spike that’s med related isn’t a huge concern and the meds are being changed up to deal with it.  They are closely monitoring and hopefully they’ll go down in the next few days.  For now, it’s not a huge deal.

The short story is that all of this is largely ‘normal’ and things are going as expected – with the possible exception of the liver enzymes.  So for now, ‘so far, so good’, but by the end of the week or the weekend, she expects to be hit by the after effects of the chemo.

She’d love to have visitors.  Check in with her first (can’t have too many at one time) but in the formal language of one set of my grandparents, “She’s receiving visitors”.

Random Updates on August 1st

 

Stem Cells have arrived

So I'm getting some texts from Kristina and will add to this page through the day.  She had a rough night last night, but sounds pretty excited now that the process has begun,

First, the pre-transplant ceremony.  Complete with a 'happy cell day'  card.  It's a transplant thing.  So this just happened a few minutes ago:

Complete with card!

Really nice touch

And so it starts

Kristina says you can actually see the tiny little golden stem cells!

Stay tuned.

 

So now that the transplant is done, what’s happening.  In a word, Haematopoiesis.  It’s a Greek word formed from two other Greek words.  One meaning ‘blood’ the other meaning ‘to make’.  Making blood.

Using stem cells.  The ones that, as I type, are being introduced into Kristina.

Fun fact:  The healthy adult human makes between 10 billion and 100 billion new blood cells each day (no wonder I’m tired).  Take a nap.  You’ve earned it.

What sorcery is at play?  Stem cells.  Haematopoietic stem cells.  Or, as my spell checker likes, Hematopoietic stem cells.  These cells have the unique ability to give rise to all the different mature blood types and tissues.  Some that stay in the bone marrow, some that flow through the blood and others that in tissues. In laymens terms, the main ones are red blood cells, white blood cells, and the platelets.

But (of course) it’s more complicated than that.  Stem cells can create a wide variety of cells, but do so through another layer of cells called  ‘progenitor cells’.  The progenitor cells are only slightly less cool than stem cells.

Stem cells can live indefinitely and create progenitors, but progenitor cells can only create certain specific cell types and can only replicate so long before they expire.  As long as the stem cells are good, the creation of the progenitors and subsequent cell types can go on for a long time. 

So what type of cells do stem cells create?  They have big fancy words and different levels of creation.  Picture a big family tree with two diverse kids more diverse grandkids and great grandkids each with special powers all originating from a single parent (don’t dwell on that analogy too long).  But it’s fascinating how these stem cells organically know where to go (the spongy bone marrow) and how they replicate into myeloid progenitors and common lymphoid progenitors which in turn create another level and type of blood cells, some of which then give rise to still other types of blood cells. 

The progenitors mostly live in the factory – the bone marrow.  But the cells they create go forth and do the real work throughout the body, delivering oxygen and fighting off invaders.

And while we’re at it, let’s ponder for a bit just how new this process of transplanting stem cells is.   It started in the 1950’s, the decade into which I was born, right here in Seattle by the very hospital where Kristina is getting her transplant – the Fred Hutch Cancer Research Center (which is now just the Fred Hutch Cancer Center).

Dr. E. Donnall Thomas was the primary driver of treatments for blood cancers in the 60’s at the Fred Hutch and received the 1990 Nobel Prize in medicine for his ground breaking research.  Most of which was done right here in Seattle.

Fascinating process and Kristina’s in the right place at the right time in history. 

Transplant Day

 It’s transplant time

 Today is the day.  Kristina had her first total body irradiation (TBI) yesterday.   3 minute test, then 6 minutes on the front, 6 on the back.  She’s feeling a little fried after the session – like a day in the sun.

Today they’ll ‘pre med’ Kristina in preparation for the transplant.  Then the stem cells are thawed.  They’ll be a honey colored golden liquid in two bags and over the course of two hours they’ll be inducted via the hickman, and as stem cells are naturally programmed to get to the thicker bones, they’ll start to be absorbed into the ‘spongy bone’ and engraft themselves into the marrow and begin to populate new stem cells.  Hopefully they’ll multiply.  Kinda like rabbits.  If everything goes as planned, they’ll create different sorts of cells and get her bone marrow back to healthy blood generation.

We all know what ‘transplant’ means, but here’s a quick tutorial on how it works.  Yes, it’s way simplified, but your humble blogger is a simple guy. 

First the donor.  We’ve been through the matching process, but when Kristina says ‘the donor is being harvested’, gruesome pictures pop into my head.  It’s unsettling.  But when Kristina described the process, it’s pretty simple.  It’s not unlike giving blood.  There are some preparatory steps, but the actual ‘harvesting’ is pretty simple.  Take blood out of one arm, run it through a centrifuge to spinoff the stem cells and then put the left over blood back into the other arm.  Freeze it, and courier it to the patient.

If getting the stem cells out of the donor is relatively easy and fairly risk free, the process of getting them into the patient, Kristina in this case, is a bit more complicated.  With a wide range of side effects.

Chemo, and in Kristina’s case, radiation is involved to lower the immune’s system to battle the new stem cells.  The very treatment that allows the body accept the good stem cells greatly weakens the bodies ability to fight other infections.  Then there’s GVHD (Graft-versus-host-disease).  This is were the donor cells attack the patients body.  Even if the match is ‘perfect’, this can happen. 

GVHD comes in two forms – acute (within the first 3 months after the transplant) and chronic (after the first three months).  The acute form can cause rashes, diarrhea and jaundice and a whole bunch of other things.  Her care team will monitor and meds may be required to block the donors ‘T’ cells which are attacking Kristina’s cells.

The chronic form is more insidious and can be life altering owing to organ damage.  It’s nowhere near certain any of this will happen, but it’s a possibility.  Another thing to worry about.

Kristina is about to battle on several fronts.  Already weakened from the earlier round of Chemo as well as the ‘one two’ punch of the lumbar puncture and ‘maintenance’ round of chemo, she’s about to be further beaten down with the pre transplant chemo and radiation.  The risk of infection is going way, way up.  Even if everything is done correctly and all precautions taken, infection of some sort is likely.  Add to that the potential of GVHD which can wreak havoc.  So many unknowns, but she’s ready to push forward.

Two last requests – care giving is going to be a thing.  Kristina has asked her ‘tribe’ to sign up to be backups.  With a primary and a back up for each day, she’ll feel comfortable.  Take a look at September 17^th as well as there’s a coverage need.   That’s the non-financial ‘ask’.

Then there’s the financial ask.  Take a look at the go fund me page.   ‘Nuff said.

The next few weeks are the critical weeks. 

As a side note, her night time oncologist is a warm, intelligent engaging professional who affirmed the questions Kristina has asked have saved her life.  She affirmed that Kristina’s active engagement in her care have produced positive results, even going back to her two earlier bouts with this disease.